By Janet Rausa Fuller
Chicago Sun-Times
September 12, 2007

He says he is not withering away, a wisp of his former self. He is not nauseous nor does he feel he is in pain.

His hair started falling out two weeks ago, but to him and, especially, his two young sons, it is more amusing than disturbing.

“They think it’s pretty funny that they can grab Dad’s hair and pull a big chunk of it out,” Achatz says.

The 33-year-old chef is having his own fun with it. Before he shaves his head, “I’m going to get a mohawk for a day. I’m going to walk in here and they’re all going to freak out,” he says.

“Here” is the kitchen at Alinea, Achatz’ world-renowned restaurant on North Halsted, where on a recent afternoon the chef stood, head down and hands busy, placing pristine blackberries atop a layer of tobacco-flavored custard.

On July 23, Achatz stunned the food world with the announcement that he has Stage 4 tongue cancer. The next day, he began chemotherapy.

Eight weeks into chemo, Achatz has not missed a day of work, save for when he was in New York meeting with doctors in July and last weekend.

“I just decided it would be good for me mentally to take a couple of days, go to New York and just hang out,” he says.

He spent time with his girlfriend, who lives there. He ate at Jean Georges. The first course — toasted black bread with sea urchin, yuzu and jalapeno — blew him away.

“It was amazing, the flavor profile. The urchin, the spiciness of jalapeno,” he says.

In July, Achatz faced the prospect of having a good chunk of his tongue lopped off. He has been told radiation therapy, to begin soon, will obliterate his sense of taste.

The irony of his illness is not lost on him, though maybe a bit overblown, he says.

“What people don’t realize is that smell is taste. So if my palate is impaired, and I have to rely heavily on my sense of smell, then maybe that will be honed,” he says. “And maybe when my taste does come back, I’ll be able to taste even better than when I started. That’s how I’m looking at this whole thing. You’ve got to wrap your whole head around it and extrapolate it, not just paint it black. It’s impossible to paint it all black.”

A white dot

It started in 2004, with a white dot about the size of a coarse breadcrumb on the left side of his tongue.

At the time, he was planning Alinea and working at Trio in Evanston. He figured he was gnawing his tongue because of stress. So did his dentist.

A mouth guard didn’t help. A biopsy in November of 2004 came back clean. End of story, he thought.

Then, in May, the dot “started going crazy,” Achatz says. It grew. It hurt. He couldn’t eat much. His speech was off.

In June, his dentist fitted him again for a mouth guard. “At this point, needless to say, I changed dentists,” he laughs.

An oral surgeon did another biopsy. By this time, around July 4, he had dropped 17 pounds and the pain was “excruciating,” he says.

The oral surgeon told Achatz it was cancer and referred him to an oncologist. The oncologist exhaled heavily and said, “It’s big.” And then: We need to cut three-quarters of your tongue out.

“In my head I’m going, that’s not an option. That’s just not gonna happen,” Achatz says.

He and partner Nick Kokonas, who was with him in the doctor’s office, went to a bar and drank margaritas. Then, they began a 10-day search to find a doctor who would cure him.

An oncologist at Sloan-Kettering Cancer Center in New York said without surgery, Achatz had less than five months to live. A Northwestern oncologist concurred, but referred him to Dr. Everett Vokes at the University of Chicago.

Vokes’ team told Achatz what he wanted to hear: they could use drugs to wipe out the tumors growing like weeds inside his tongue. They told him he had a 70 percent chance of beating this. Because the cancer had not spread beyond his lymph nodes, “That basically is the difference between cure and control. Life and death, really,” U. of C. oncologist Dr. Ezra Cohen says.

But before this welcome news, while still in New York, Achatz called the restaurant to fill them in. Staff crammed into the first-floor dining room. The room was so silent, the chef — talking by speakerphone — had to ask several times whether the call had been cut off.

His first day back from New York was unforgettable, sommelier Craig Sindelar says.

Looking forward

Achatz is busier than ever.

On Tuesdays, when the restaurant is closed, he sends text messages and makes phone calls while drugs drip through an IV into his arm at the U. of C.

He is working on a mammoth cookbook with some 700 recipes. Next week, he launches an online teaser for the book, where fans can reserve their copy and have access to videos and bonus recipes. A second restaurant in Chicago is in the works — “high-concept” but affordable food, he says. At Alinea, he is rolling out a fall menu, bit by bit.

Achatz isn’t working like mad because he has something to prove. He just has so much to do. “It comes down to survival and quality of life, and my quality of life is right here,” he says. “Aside from my kids, this is it.”